Friday, December 27, 2013

Update 12/27/13

I realized it has been a really long time and a lot has happened since my last update! Things have been up and down, seizures were back so we decided to try the modified Atkins diet, not wanting to be hospitalized to do the full ketogenic diet. It took us 3 weeks to really get everything set up to be able to start, we had to get a thickening agent that wasn't full of carbs, and that is extreamly more difficult than you would think. So we got everything squared away an started it .. First day was not so bad but it just went downhill from there. Day 2 he was eating less and starting to be lethargic.. By the end of day 2 it was bad. Day 3 not wanting to eat or drink anything and we start the urgent care to hospital visits. Long story and very stressful couple days, and 3rd day we saw over 30 seizures! More than we have seen since he was first born. He ended up having an extremely low blood sugar and acidosis. He ended up in the hospital for over 3days ... We decided after that to stop the diet and try another option. Things since have been going pretty well. We are still seeing seizures here and there, but w the new treatment, a new healthy purée diet, he's gaining weight and seems just more aware and with it. Using his hands more and moving around ... For now things are good! We are getting to celebrate another season of holidays and are grateful for every seizure free day we have ;)